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Participation of
persons with
disabilities in policy
and decision-making
Magdi Birtha
Centre for Disability Law and Policy, NUI Galway
‘The rights of persons with disabilities’ organised by
the Council of Europe
Vadul-lui-Voda, 18-19 September 2013
+
Overview
■
Participation as a general principle
■
Representation: NGO and DPO
■
■
■
Civil society participation in a developing
country: Zambia
Tokenism vs. meaningful involvement
The European Disability movement and its
current involvement in policy-making
■ Conclusion
& Discussion
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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I. Participation as a general
principle
■ Concept
of participation in international law:
breaking down barriers that prevented persons with
disabilities to participate in the community at all
levels
■ Council
of Europe Action Plan 2006-2015:
‘The key objective of the Disability Action Plan is to serve as a
practical tool to develop and implement viable strategies to
bring about full participation of people with disabilities
in society and ultimately mainstreaming disability throughout
all the policy areas…’
■ Participation
is a leitmotiv in international
documents (CoE REC(2006)5, CRPD)
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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‘Nothing about us without us!’
■
This is a longstanding motto used by the disability
movement
■
What does this mean? Literal interpretation?
■
No decisions affecting the life of persons with disabilities
should be made without persons with disabilities
■
Persons with disabilities are experts by ‘lived experience’
– does not mean they are experts in all fields
■
Challenge: how far we can take this principle in policymaking?
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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Participation of groups facing
multiple discrimination
■ Disability
is a cross-cutting issue – there are
persons with disabilities who are facing specific
barriers and experience multiple discrimination
■ Generally
lower levels of participation in society
than other persons with disabilities
❖
Children and young people with disabilities
❖
Girls and women with disabilities
❖
Ageing people with disabilities
❖
LGBTQ people with disabilities
❖
Persons with disabilities from migrant communities
❖ Persons
'Participation
of persons
disabilities in policy
decision-making'
withwith
disabilities
fromand
minority
communities
18-19 September 2013
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II. Representation: NGO and
DPO
■ Who
should represent the group?
■ NGO:
organisation for persons with disabilities
(family organisation, human rights NGO, etc.)
■ DPO:
special form of NGO; organisation of
persons with disabilities (lead and operated by
persons with disabilities)
■ Thematic
organisations (employment, education,
accessibility etc.)
■ Organisations
representing certain parts of the
movement (persons with visual impairment,
persons with psychosocial disabilities etc.)
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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Representation: Who is the
‘us’?
■ The
disability movement is not homogenous –
different groups, different aims: often fragmented
■ E.g.:
inclusive education – deaf community
■ Some
parts of the disability movement are often
left out from negotiations:
❖ organisations of persons with intellectual disabilities
❖ organisations of persons with psychosocial
disabilities
■ Who
is actually represented? Who is not
represented?
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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III. Civil society participation in
a developing country: Zambia
■
UN CRPD ratification: 1/2/2010 – state obligation
to ensure the participation of persons with
disabilities in policy –and decision-making.
Monitor the Convention with the involvement of
civil society
■
Focal point: Ministry of Community Development
appointing focal point persons in relevant
ministries
■
Article 33.2 framework: Independent
Monitoring Unit (IMU) – initiated by civil society,
not CRPD compliant (lack of collaboration with the
NHRI)
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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Zambia
■ Strengths:
❧Civil society is actively engaged in the implementation
and monitoring process of the CRPD
❧DPOs are aware of the obligations under CRPD and of
important national issues (e.g. legislative changes)
❧ Using CRPD as an advocacy tool
❧ Planning advocacy in a strategic manner
❧ Pro-activity
❧ Awareness-raising in the community
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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Zambia
■ Challenges:
❧Developing country – no internal funding for the
implementation of the CRPD
❧Government did not even provide funding for
the established IMU
❧Funding from international donors came to the
end in January 2013 – sustainability?
❧IMU is lacking the independent element – better
working relations need to be established with
the Human Rights Commission
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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IV. Tokenism vs. meaningful
involvement
■ Tokenism:
formal consultation, no impact
■A
typical case of tokenistic participation:
A few randomly chosen organizations are invited
to give their opinion on a draft written by public
officers – too late to make any substantial
changes, lack of broad public consultation with
all the relevant stakeholders, no impact to be
made by DPOs
■ Meaningful involvement: make real impact, active
presence during negotiations
■ New,
collaborative, accessible and transparent working
methods need to be established
■ Prerequisite:
Empowerment and capacity-building
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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Criteria of effective participation
in policy and decision-making
■ Participation
from the very first stage
■ Accessbility
■ Broad
collaboration
■ Continous
evaluation
■ Transparency
■ Stable
funding for operation provided by the
government or private donors
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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Challenges in effective
participation
■ Sustainability
is very challenging (What’s when the
money is gone?)
■
What satisfies DPOs (‘experts by lived experience’) is
not always compliant with international law
■
Range of critical success facts seems broader than
financial issues
■ Establishment
of collaborative working relation with
public administration, National Human Rights
Institutions
■ Measuring
real impact
Centralisation vs. Representation
■
'Participation
of persons with disabilities in policy and decision-making'
18-19 September 2013
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Social inclusion: common
interest
■ Visibility
■ More
of persons with disabilities – less stereotype
sensitive and tolerant society
■ Valuing
diversity – inclusive education is not only good for
persons with disabilities, but to anybody
■ Participation
in the society – presence at the labour market –
income – becoming taxpayer – less dependency on the
social welfare – decrease poverty
■ Persons
with disabilities can make important contribution to
the society
■ Barrier
free society would be beneficial for a broad range of
people regardless of disability
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
+V. The European Disability movement and its
current involvement in policy-making
❖ European
■ Based
■ Was
Disability Forum (EDF)
in Brussels, Belgium
created in 1996 by its member organisations
■ Independent
DPO that represents the interests of
80 million citizens with disabilities at EU level
■ Lead
by persons with disabilities
■ Umbrella
structure – member organizations are
the national umbrella DPOs
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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Nine priority areas for EDF
■ Actions
towards the full employment of people
with disabilities
■ Obtaining
a comprehensive EU law that will combat
discrimination against disabled people in all fields of
life;
■ Promoting
the recognition of human rights of people
with disabilities;
■ Promoting
and achieving access for all, particularly
in the field of transport, built environment, information
and communication technologies;
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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Priority areas for EDF…
■ Promoting
full participation in society by access userled, quality and affordable personal and social services
■ Playing
an active role in the debate on the future of
Europe
■ Mainstreaming
disability in development cooperation
and EU pre-accession process
■ Building
up a stronger and unified European
disability movement
■ Ensuring
the diversity and the disability of all
impairment groups in EDF work and priorities
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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V. Conclusion
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Participation is an extremely important principle to achieve
social inclusion of persons with disabilities
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Breaking down barriers that prevented persons with
disabilities to participate in the community at all levels
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Involvement at all levels of policy and decision-making
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Capacity building, accessibility for the organisations of
persons with disabilities
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Participation is mainly not a money issue – other dominant
factors
■
Ensuring meaningful involvement instead of maintaining
traditional tokenistic participation
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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Discussion
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013
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■ Thank
you for your attention!
■ magdolna.birtha@nuigalway.ie
■ http://www.nuigalway.ie/dream/
'Participation of persons with disabilities in policy and decision-making'
18-19 September 2013